Autism and Aggression: The Dark Side of Autism

Children with Autism who show aggressive behaviors are like the black sheep of the Autism community. There is really no good treatment available to help you deal with these kinds of behaviors. It seems to only be a small number of children who show these types of behaviors, and I am sure there are some numbers out there somewhere that specify that, but for us it is our everyday reality. My daughter has a lot of aggressive tenancies, not only towards us but also towards her little sister and her peers. So what are we to do about that? I guess that is the golden question because so far no one has been able to answer it. 

So aggression from my daughter is very much a part of our daily lives but it is not something we often talk about because it seems like we are the only ones I know that are going through it. Most people cannot relate to what we are going through and it is extremely isolating. I have mentioned it a few times to various other people but it is one of those things I do not dwell very much on because again very few other people are going through what we are going through. It is isolating even in a community of other special needs families. You can relate so much to other special needs families on so many issues but this is one of those things that everyone I have come across so far is not dealing with, and we are so I just keep silent about it. 

They say behavior is a form of communication but for the life of me I have no idea what she is trying to communicate. Is she sick, in pain, is she frustrated from her lack of communication? Who knows! It has been going on for about a year now so I think we can rule out sick or in pain since unless it is something chronic that we have yet to find it would not be that. The aggression also seems to pop out of nowhere so it is very hard to link it to any one thing. No one is really safe from her, if you are near her and she can get to you she will hit you or pull your hair. 

Of course she is not constantly aggressive. There are a lot of times when she could be sitting next to you as nice as can be and that is probably the case 80 percent of the time, but that other 20 percent, watch out! We usually have several instances per day of aggressive behavior, her father and I seem to be her favorite targets. 

We have looked into why she does it or what she gets out of it and the only thing we can come up with is she gets excited about the reaction that people have to her aggression. We have tried to minimize our reactions and that has helped to some degree, but when you are dealing with aggression against another kid you cannot really tell them to minimize the reaction. 

So that brings me to why this is on my mind today. My daughter has social skills group once a week. At pick up the person in charge pulls me aside for a "talk" Great here it comes! So she said that she had pulled another kids hair today and that they are a program with a 2 to 1 ratio and that they just cannot have those kids of behaviors there. So hearing this I immediately get upset, I mean I completely understand that they need to keep their other kids safe but if you cannot deal with her then who will. It is like she has so many things that she needs help with and this is the only program like it in the area so where do we turn if they cannot let her participate in it. She was on the waiting list for a year just trying to get in and as far as I know there are no other groups like it. This also was not our first warning, she has only been there about 6 weeks and this is warning number 2. The first warning was a little bit different, she picked up one of those googly eyes and was chewing on it. We got the same warning that time, we are only a 2 to 1 ratio program if she has Pica then she cannot be here. What! She picked up one googly eye and chewed on it, that does not really constitute Pica.

We have also had issues with our new therapy place and her behaviors. The place that we were going to closed down so now we are at a new place for our speech, occupational, and physical therapies. On our very first day there the occupational therapist was doing her assessment of Elizabeth and happen to see her pulling my hair. Elizabeth always gets really anxious in new places and usually takes that out on me. I will not make excuses for her behaviors they are what they are and they happen but there is little that I can do about it. So the OT says that if she has behaviors like that we cannot help her here. So again I am hearing this, your child has behaviors and we do not want to deal with a child who has those behaviors. I wanted to say well if you cannot help her then who can, but I was too upset and usually when I get that way I clam up and do not say anything. I will also mention that after the other place closed they are now the only place around offering therapies. I did eventually get up the courage to ask if they cannot help her who can they recommend that can and her response was that maybe she should not have therapy. 

So that brings me to today and what is stewing around in my head. If a child has deficits the only way to try to correct those is to have therapies and other life skills taught to her, but what do you do if everywhere you are turning says your child is too much to handle. Do you just give up? Does your child just stay at the level she is at forever? How can I ever expect my daughter to succeed if she is not given the tools to do so? They offer all of these great services for kids with Autism but if your child does not fall into what their idea of Autism looks like you are suddenly black listed. How do I get her to try to be a functional adult if in childhood no one wants to help her or deal with her. I realize some of that responsibility falls to me but I am sort of out of my element in this. 

Autism and aggression is extremely isolating. It is like you are already alone when you have a child with special needs but now you are even more alone even among "your people" because you feel like you are the only one dealing with this. Where do you turn when their behaviors are out of control and you are at a loss as to how to deal with them? How do you ever get a break from your child when you cannot leave them with anyone for fear of the aggression. 

So I guess that is where we are not now. I will keep fighting for her to get services that she needs. I get caught off guard when they bring it up to me, even when I am sort of expecting it, hearing it is still upsetting. The constant anxiety of worrying if she will have services or not eats away at me. We finally come up and get services in place after waiting and then we are constantly being threatened that they will be taken away. It is like someone dangling a carrot in front of you and just when you reach it they pull it away. The worst part is that I cannot control the behaviors that she is having and they tell me about it and I have no answers for them as to what they should do. Its like this is your area of expertise, shouldn't you be coming up with some solutions? I guess not, because again we are the black sheep of the Autism world so I guess that means we are easily discarded. 

 

Our Story

So I have not written in quite awhile. I have had a sort of writer’s block/laziness issue. We have also been really busy with moving and doing the transition to kindergarten. That will actually happen this upcoming school year but as most of you special needs parents know there is a lot of prep work that goes into the planning for the upcoming transition. Elizabeth has come so far. It is sometimes hard to realize just how far she has come seeing her every day, but when you look back at the last few years you truly do see that she has made some huge milestones.

Elizabeth was diagnosed with Autism at the age of 2 and a half. I had concerns prior to that but every time I would bring them up the doctor would sort of dismiss them. Our doctor said several times that she did not have any delays and that she was just a larger baby and that they tended to do things a little slower. Elizabeth was a fairly large baby when she was born but she was not really a huge baby by any means so this never quite made sense to me. When she turned 2 I took matters into my own hands and called early intervention.

Early intervention came out and did their assessments and sure enough she qualified for speech, occupational, physical, and developmental therapy. I expressed my concerns to them regarding my suspicion that she may have Autism and one of their assessors assured me that she did not. I was relieved and assumed that this therapy would be short term. She would have it and get caught up to her peers in no time. Little did I know that assessor should not have said that, to this day I am not sure why she did since it was not really her role or her place to do so, but I did not know that at the time.

A few months later our supports coordinator at the time suggested that she be evaluated at the Children’s Developmental Unit. I was unsure why I needed to waste my time doing that since the EI evaluator already told me that she did not have Autism. She suggested it might help us get more access to therapies and such, now looking back I am pretty sure she saw all of the glaring red flags of Autism but was being nice enough not to say so. So we set up our appointment at the CDU and then waited, there was a 6 month waiting list at the time. Luckily we ended up getting a call that they had a cancellation and they could move our appointment up. Our appointment was originally set in September and we ended up getting an earlier slot in April.

I went into the evaluation thinking it was nothing but a formality and came out of the evaluation with an Autism diagnosis for my daughter. Talk about a horrible day.  Looking back I really wish that EI evaluator had not said that she did not have it. That really gave me a false sense of hope. I had assumed she was an “expert” so of course I took her at her word. Looking back I know better now but at the time I had no idea who did what and who could doll out that sort of advice.

I will also mention that the evaluator at the CDU was kind of mean. Her bedside manner left a lot to be desired. I will not go into great detail as far as that goes but her way of letting me know was probably not the best way to break the news to an unsuspecting parent.

I was so upset when she received this diagnosis; it really caught me off guard. I think deep down I had known that it was the case but I had allowed myself to be falsely reassured and I think that made it so much harder to hear when the truth came out.

So I went home and I started researching. I looked up everything Autism related, I wanted to find out how I could “fix” this situation. There is a ton of research out there and if you are new to having a child diagnosed you will likely do this as well. You will research until one day you cannot do it anymore and then you will just stop for awhile. When you stop though it is a good thing, when you stop you can stop obsessing over trying to fix what you cannot fix and just focus on being a mother.

After you get over your research burn out you will start it up again but not as intensely as you had before. You will glance at some new studies to see if there is anything that sticks out, trying to find out if there is anything that is really worth trying. We have tried several things, including special diets and supplements and they have not helped us one bit. I will say that it does help some kids so don’t give up but just know that if it doesn’t help you and your child that it is ok. Your child will likely improve, one day you will look back and you will see how far they have come. There are things that Elizabeth is doing now that as a 2 year old I would not have thought possible, so just know that things usually get better. Just take it day by day and one day you will see it coming together and that all of your hard work is worth it.

So that is how the start of our journey went, I will continue with our story later on…..

Credits to Brenda since she started to write out her story and inspired me to write down some of our own, and also for helping me get over some of my writer’s block. I had a really good conversation with her today that sort of inspired this piece.

Thanks for reading!

Pushing for Independence

Tonight I attended a support group at my daughter’s wrap around agency where they had a presenter who talked about a method called Rapid Prompting Method (RPM). The method seems really interesting but it requires the child to spell out what they are trying to communicate so I am not sure it is something my daughter at age 5 would be able to do. They start to work with children at age 4 so there may be a few things that start building on now. There are a few books available on this subject and I plan on shelling out the money for them and reading them in the precious little spare time that I have.

During this group and this presentation the topic of how much is actually going through the minds of our non-verbal kids came up and it was a reminder to me that I need to really start assuming my daughter is in there and understanding me. I really need to stop talking about her or treating her as if she does not have the ability to understand the things that I am saying. I need to start talking to her instead of at her even if she is not speaking back to me. This RPM method seems to have a lot of promise and I plan on researching it more, it is another method of giving your child a way to express themselves. I am not sure what method or system we will end up using but I will keep trying to work with Elizabeth to find a way to tell us how we can meet her needs. I know that she understands language, when I talk to her or ask her to do something she will listen and sometimes follow instructions so I know she has the ability to understand language.

My daughter just turned 5 last week and I really need to work on treating her more like a 5 year old and not babying her. I tend to just do things for her since it is how I have always done it instead of expecting her to do it herself. She has the ability to do so much more than I give her credit for. One of the things that she loves doing is taking all of her clothes off, she does this constantly but when I go to bathe her at night I still take off her clothes for her. I am not sure why I do this, I guess it is because I always have and she has never offered or attempted to do it on her own. Tonight for bath I asked her to take off her own clothes and she did it just like that. I really need to start pushing her more; she can do a lot of things that I just automatically do it for it. I really need to change my habits.

On another note I should probably buy stock in Lucky Charms, that has been Elizabeth’s food of choice lately. She mostly eats the marshmallows but every now and then she will eat a few of the cereal pieces as well. We make her use her spoon to eat it and here and there she gets a few cereal pieces on her spoon as she is attempting to pick out just the marshmallows, at this point with her picky eating I call that a win. Several times a day she takes my hand and leads me over to where the cereal is which her way of asking to have some.

Christmas time is almost upon us and I have already almost completed my shopping. My older daughter is hard to buy for because she really has very little interest in anything toy related anymore. My younger daughter is the opposite, she has a ton of different interests and the difficult part for her is narrowing down which toys to get her. For my older daughter I typically end up buying her a few toys that I hope she will like and a few sensory things. This year I bought a pair of noise reducing headphones and a sensory pillow for her, she will probably like these items much more than the toys. I love Amazon, I can find so many sensory things for her on there. I think that I probably do 90 percent of my shopping on there, it also helps to have Amazon Prime with the free two day shipping. I am very thankful for shopping websites like Amazon, prior to that I would have actually have to physically go to the mall and shop.

Thanks for reading. Sorry for any errors, I really hate proofreading.

Moving

So we have finally moved into the new house. My daughters have really taken everything in stride. It amazes me how well they adjust to living in a new house. This is our second move within the year since we had to move in with my grandfather for the summer while our house was being built. The kids have handled things way better than I have.

Currently we are still in the unpacking phase. We have a lot of things and really should go through all of those things and decide what to keep and what not to keep. The good part about this is that we are unpacking a lot of toys that we packed up when we were trying to sell our house. The girls are pretty excited seeing them again. I am pretty sure that after not seeing them for 6 months they forgot about them.

So while my older daughter is settling into the house well she is having some regression issues when it comes to her play skills. She has never really had great play skills but she at least had some interesting in toys. Lately she really only has a fleeting interest if any and its mostly stim related. I spoke to her teacher about this and luckily they can provide some developmental therapy for us to possibly work on that issue one on one with her. Most of her therapies are provided in a preschool setting so it is hard to address that particular issue there with so many other kids and things to focus on.

We have also been dealing with some aggression issues at school. I think this is possibly related to her inability to communicate her needs. We met with a behavioral specialist and he thought it was possibly her trying to have interaction with her peers or her sister but not knowing how. If that is the case I guess its sort of a good thing, at least she is wanting to interact. Now all we have to do is teach her how to interact properly, this is much easier said than done.

We are also going to look into getting her an iPad through school to just use for communication. Currently we are only working with PECS and that is going well. I think the biggest issue with using the PECS system is trying to remember to get out the picture book and making her use it. She seems to know how to use it but prefers to just lead me to the things that she wants instead.

So one way I got to escape the stress of moving was to go to an event that was put on by the Autism Connection of Pittsburgh. It was a nice event held at a whiskey bar. I was really hoping to have a nice glass of wine but they only had whiskey. My friend and I both tried some of the whiskey drinks, they were alright. I was not really a whiskey drinker before I attended this event and I cannot really say I will be a whiskey drinker after this event, but it was nice to try something new. The event was fun and it was nice to spend a night out with my friend. I get to see her all of the time but its not often that we actually get to go out and really spend time doing fun things.

Well that is all for now, time to get back to unpacking!

Days of Fall Fun

So today we decided to go out and enjoy this beautiful fall weather with my in-laws. It was a great day and we had fun for the most part. Outings used to involved strapping both kids into a stroller and off we would go, however at this point the kids are getting a bit big for the stroller. At almost 5 and almost 3 it is time we started going out without it. So that was our adventure today, no stroller. 

Overall it went pretty well, the upside was that no one ran away and we did not lose anyone. The downside was that my older daughter walks super slow. She toe walks so I am not sure if that is the reason why she is so slow or if its just her not being in any particular hurry. She also trips a lot, this also could be part of the toe walking I think. She was doing pretty well holding my hand but when she is walking with me and I am holding her hand it feels like she is constantly trying to pull her hand away. It is like a repeating cycle, we will walk a few feet while she is pulling on my hand to get her hand out of mine, finally she gets her hand out and I re-grab her hand. While this is not a huge deal it does make me worry that she is going to jet off one of these days. 

Another issue is parking, where we were at you have to park really far away. We happen to get lucky and found a close spot but in places like this without a stroller I think a large parking lot might really become an issue. I know that you can get handicap placards for kids with Autism but I had not considered it until now. I am still on the fence about it but I am going to think it over until her next doctor's appointment. I think my biggest fear is the doctor judging me like I am just being lazy and that it is not really a safety issue with her. 

I think for next year I am going to invest in a wagon. They may be too big for the stroller but a wagon might just suffice for a few more years. It will at least be something to put all of my bags in. Since my older daughter is not potty trained as of yet we still have to lug around a large diaper bag. It will also help out when they suddenly decide that they do not want to walk anymore. They both did this at various points today and they are getting way to heavy to carry. 

We had a lot of fun today even without the stroller. My older daughter did really well at the crowded restaurant and she even got to ride a pony. We went to a small petting zoo afterwards and she even seemed to enjoy that. I did not get to enjoy much of it with her since my 2 year old had an epic meltdown and we ended up going to the car. I think she was overdo for her nap. Next weekend is supposed to be another beautiful day so there will be more fall fun in store. 

The First Day of School

Today was the first day of school for both of my girls. My 4 year old is in her second year at a preschool through the intermediate unit that is a class specifically for kids with Autism. My 2 year old just started at a typical preschool in the two year old class.

It is kind of bittersweet to see my two year old. She seems to really excel and I think she will do really great at this preschool, but in the back of my mind I always think back to how we tried to do a typical 2 year old preschool with my other daughter. It did not go so well.

We attempted to start my 4 year old who was 2 at the time at a local church preschool. We only made it about a month and it was a terrible experience. Instead of even making the effort to get her to participate they would just stick her out in the hall with the teacher's aide. I ended up going with her the last day we were there and we both basically stood out in the hallway while they had circle time. They were alright with letting her do the free play but once it was something structured she was cast out to the hallway. They did not even give her the opportunity to try. We ended up getting locked in the stairway while we were out in the hallway, I had went down to the stair well since she was singing in the hallway and I did not want to disturb anyone. They did not even come to let us out of the stair well until the end of the school day which was about an hour later. That was the last day I sent her there. What is the point of sending her to a place that has no desire to even attempt to get her to participate.

The worst part was that when she was given her diagnosis I called them up to let them know and they assured me it was not a big deal and that they could accommodate her. I really wish that they would have been upfront with me about not even wanting to try. We ended up sending her to the Intermediate Unit preschool about a month later when she turned 3. I was so scared that we would have another horrible experience but instead it was great. They knew how to handle kids like her and were able to see her potential. She is in her third year there (the first year was only a half year) and she is doing great. She really enjoys school and looks forward to going there. This was a nice change to the crying and fighting me to go into the other preschool. We had only been going there for a month when we quit and she already hated it. I am really glad that she is in the right place and that she is happy there.

Now back to the my current 2 year old. She did pretty well, only a little bit of crying when the parents left the room. The other kids were all crying as well and they said that they expect that. She is very social and I am sure she will make friends easily. It is such a change from our last experience where going in I had "that" kid. You know the one who isn't potty trained, who doesn't talk yet, and cannot sit still. It was nice to not feel like all of the other parents are judging you, but also bittersweet.

I am too tired to proofread so I apologize if there are a ton of mistakes. Thanks!

Crazy Schedules

I have not written in awhile. It is mostly because things have been really crazy around here. It seems that around the time that the start of school comes around life just takes on a new level of insanity. You have to go and school shop, get backpacks, haircuts, shoes, ect. Then you  have to go and meet with new teachers and change around your schedules for the support staff you have for your special needs child. My two daughter are only in preschool so I am sure the stress will only increase as they get to grade school.

It is all so overwhelming; then add to that I have had this cold that does not seem to want to go away. My cold started with a simple cough, which turned into bronchitis, seemed to get better, but then got bad again. I am still wheezy and coughing but I really do not want to go back to the doctor and spend another $35 in copay. I have been there twice now so I am just going to ride it out at this point. =)

We still have not heard anything about our new house. I am really hoping it will be ready around mid Sept since driving Elizabeth to school everyday will be hard since I work everyday. I will also have to drive Samantha to school but at least I have arrangements made for her to be picked up the two days a week that she attends.

I am really hoping that the girls transition well to the new house. I think we may try to do another round of potty training with Elizabeth. What a great way to break in a new house with new carpet right?!? Any potty training tips or suggestions for kids with Autism please feel free to leave a comment. I can use all the help that I can get.

I have also signed up Samantha for a dance class. It is amazing how easy it is to find activities for children without special needs. I would really love to find a dance class for Elizabeth but I want something that is geared towards children with special needs. We have tried other things that were not and usually they want to stick us in the Mommy and me classes where its all little 2 year olds and us. I think that this point Elizabeth is too old to be in that type of class. I want to find something for her that is geared towards her needs and understands her. We did do gymnastics over the winter and spring but we were doing private lessons and while it was nice they get kind of expensive. So if anyone knows of a special needs dance class near Pittsburgh let me know!

Sorry if this post is sort of rambling and has a ton of grammatical errors.